Find the Right Specialty Center

The sad reality is there are specialists who know what to do with mesothelioma and doctors who don’t.

And if you go to those who aren’t familiar with the disease, both your quality and quantity of life will suffer.

We started — and ended — at Duke University Medical Center. Everyone there was wonderful. It felt like they were working with you, for you, and not battling you.

They helped us all the way through.

Caring for a mesothelioma patient was like a roller coaster, and you had to learn how to ride it.

There are ups and downs. You enjoy the highs, but you prepare for the lows.

There were times when you didn’t know if you would survive. There were some bright moments, too.

Be Organized

I would also tell people, from the beginning, to find a good record-keeping system.

Otherwise, the paperwork will overwhelm you. You see so many doctors — a thoracic oncologist, a surgeon, a radiologist, a pain doctor, a local doctor — that it all gets complicated quickly. Keeping track of all the medications, appointments and bills is not easy.

Caregiving can consume you. It is like a job — a really hard job.

It can be overwhelming, but it’s doable. I was also caring for an elderly parent for a while. I was working full time until the last couple years.

There are so many doctor appointments, checkups and scans. Our medical center was almost three hours away.

Caregivers Must Find Therapy

You have to realize that life still goes on. There are bills to pay, laundry to do, pets to walk. You have to ask for help, and you’ll find that people will usually want to help you if you ask.

Don’t be afraid to ask.

People also will tell you to make time to take care of yourself, but it’s not that easy. Too many times, there is no time to do that.

Every caregiver needs something to keep them sane and stick to it no matter what.

For me, twice a week I’d go to the gym and work out, and once a week I had choir practice. Those three trips were like my therapy, where I could get away and not think about anything else.

I tried too hard to be stoic. When I did cry, I was in the shower. Don’t try to hold in the tears. That only makes it worse.

Anxiety became an issue for me. Anticipating his CT scans, waiting for the results, and knowing that everything in your life hinges on the next scan, was excruciating.

I couldn’t sleep the night before a scan. Waiting for the results was difficult. I dreaded it so much, I started taking his anxiety medicine.

Discuss Options Early

People will tell you to take life one day at a time. That’s good advice, but I couldn’t do it.

It just wasn’t in my nature, so it was a little more difficult for me.

Also, discuss early in the process what your loved one’s wishes are, and who will be making the decisions about their care.

Lannie did not want to be kept alive on a ventilator. He made that clear. He made all those decisions early, and it worked for us.

The ball was always in his court. My role was to support his decisions. We listened to another man with mesothelioma, and he had become bitter that his wife became like his mother near the end. I didn’t do that. I was always his wife.

During the process, and when it’s over, most caregivers second-guess themselves. I did.

What if we had done this, or done that, would things have been different?

Lannie Chitwood fishing at Cape Hatteras in North Carolina during summer 2017.

Quick Ending Can Be a Blessing

For Lannie, the end came fast.

Ten days before he died, he went for a boat ride with his son-in-law. He enjoyed himself on the water.

The next day, things turned bad and he went into our local hospital.

A few days later, we went directly to Duke University. He died two days after arriving.

Lannie was fighter, right to the end. And we all respected his wishes. The doctors and nurses understood that.

He was on a ventilator, but only for a few hours, just long enough so our children could get to the hospital to say goodbye. That’s what he wanted. When they took him off the ventilator, the medical staff couldn’t believe he woke up to say goodbye.

Then he just faded off. That was his choice. I’m so glad it ended the way it did. It was a real blessing for everyone.

Linda and Lannie Chitwood published “Fear 2 Faith: Our Journey Through Mesothelioma,” in 2012. It details many of their highs and lows, with the heart-wrenching and heartwarming times they had in the first five years battling the disease.

Connect With Us:

The information on this website is proprietary and protected. It is not a substitute for professional medical advice, diagnosis or treatment. Any unauthorized or illegal use, copying or dissemination will be prosecuted. Please read our disclaimer for more information about our website.

Asbestos.com is sponsored by law firms. This website and its content may be deemed attorney advertising. Prior results do not predict a similar outcome. For more information, visit our sponsors page.